The partnership is working with New Zealanders to develop social license guidelines for data use. The guidelines, according to the Data Futures Partnership website, will set out the ways in which those working with data can build confidence by using data safely and in a way that will be of benefit to individuals and the wider public.

"I am passionate about the power of data and how trusted data sharing can be used to change lives for the better," she says, of her role.

To illustrate, she shows contrasting samples of positive - and otherwise - use of data.

A recent example of the latter was when the Ministry of Social Development asked not for profits to give them personal data, not just data about clients themselves but data about clients' children and clients’ partners.

A positive use of data is the Southern District Health Board’s HealthOne, where patient data is shared between between doctors, pharmacists and ambulance service to provide the best possible picture of the patient.

In an accident, the hospital can treat a patient efficiently and quickly, for instance, when they know if the patient has any medical complications such as allergies.

She cites another initiative, Manaiakalani, an education programme to help improve students outcomes for low decile schools in Auckland.

“We can see where good examples of data is shared and technology is used with great outcomes for people.

Lessons from the field

During her term, the City Mission had a research project called Family 100, where they interviewed families living in poverty. The participants provided detailed information on a wide range of relevant topics including housing, food, services, education, justice, debt, employment, health and support networks.

She says the families were asked to describe the organisations they visited in a span of two weeks. These included government agencies (e.g. social services and justice), health networks, debt agencies and churches.

“Often these families get told ‘to get a job’,” she says. “They have got a job, it takes all of their time to go around all of these agencies.”

She says she asked families, “what value did you get out of this”, after meeting with the agencies over the two weeks.

“Most of them would say, ‘little or nothing’,” she states. “Think about the cost and the outcomes for the way we collect and use data for families. It is inefficient, it is not held and it is not shared, and does not create better outcomes for people who are in these systems.”

She says her work at Data Futures is about social investment. “I am passionate about using data better to get improved outcomes for families,” she says and also to include people in that conversation.

She says the partnership has held a series of workshops nationally, from Invercargill to Whangarei, on how New Zealanders feel about their data being used and shared.

The participants were across a broad section of people, including Pasifika, rural/urban, homeless, school students and older people. There were also 4000 people who were involved using an online version of the workshops.

Interesting and thought provoking, "The partnership is working with New Zealanders to develop social license guidelines for data use" https://t.co/MstYk3pdLm

For instance, when it came to health data, there was a value proposition, to the doctor and ambulance paramedics, and to the person who is being treated more effectively and efficiently.

“When there is no value proposition, they want to know what you are going to use it for, how it is going to be used, they want to know about control,” explains Robertson.

The people were also asked how they would feel if their anonymised data was used to develop policies, and given to business, iwi and government.

I am passionate about the power of data and how trusted data sharing can be used to change lives for the better

Dame Diane Robertson, Data Futures Partnership

When people were asked what they think the guidelines should contain, certain themes emerged.

These include purpose (what will it be useful for?), value (what will I get out of it, what will you get out of it?), use (what are you going to use it for?) and control (informed consent and the ability to remove permission as well as time limits on permission).

One of the biggest issues is that people don't trust the data held about them is accurate and want to access it look at it and check if it is accurate and valid.

She says other themes that emerged were security (data breaches) and transparency.

As well, they want a governance body, a form of Data Commission, an independent authority that deals with complaints.

“More and more of data is being collected about us that we don't necessarily have control of,” she states. Photos are taken of people as they walk down the street, or their information is collected as they swipe their bus cards.

“We should have control of how data is being used. Is it being used for our benefit, or is it being used as a deficit model against us?”

“Social license is going to be the biggest issue around data,” she states.

“Underneath all that, you have to determine how to use it, its purpose, its value, its security and its control. But most of all, what you need to be doing is having a good engagement with the people you are developing products for data use, to understand how it can benefit people and for people to understand the benefits for them.

“We need to remember one of our biggest jobs is to extract the value from data,” she tells the SUNZ conference attendees.

“We need to start thinking, what’s the value, what’s the risk, and how to mitigate the risk."

“Collect the right data,” she continues. “Get as much value as we can, to make New Zealand a fantastic place to live in.”

Robert O'Brien, data scientist at Noos, talks about the Aotearoa New Zealand Data Commons project. He says the project can propel New Zealand as a world leader in the trusted, inclusive and protected use of shared data, to help deliver a prosperous society.

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